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News   11.16.2017

Drug prices: Who gets hurt

David Lichtenstein

A new treatment could extend David’s life by 33%. But he can’t afford to take it.

David Lichtenstein has ALS, also known as Lou Gehrig’s disease, and likely has only 3 to 5 years to live. This summer, the FDA approved a new treatment called Redicava that could extend David’s life by 33 percent.

But he can’t afford to take it.

“It’s been approved by my insurance but my cost is $2,000 per infusion,” explains Lichtenstein, who is a former plumbing company manager and lives in Davenport, Fla. The treatment requires 14 days in a row of injections followed by a two-week break and then 10 treatments per month for the rest of his life. A year of treatment would cost him $265,000 out of pocket. “It’s very frustrating,” says Lichtenstein. “If I could live longer … if that could add one more year.”

Radicava is a so-called “orphan drug,” a federal designation that gives its manufacturer, Mitsubishi, extra incentives and market protections. It’s also a rule that is often gamed by the pharmaceutical industry to boost profits, say critics. 


Kristen Caffrey

“Can I responsibly have kids when I have this very expensive drug I need to stay on?”

Gaucher’s syndrome is a rare disorder that afflicts fewer than 10,000 people in the United States. Kristina Caffrey is one of them. Its symptoms include an enlarged spleen, excessive bruising and bleeding, and weak bones. It is caused by an enzyme deficiency.

Caffrey was diagnosed at age three. The treatments for her disease have gone through several iterations over the years – all of which are expensive. The newest, called Cerdelga, is a pill that costs $310,000 annually. Luckily, Caffrey is an attorney and has good health insurance through her law firm. She can afford the monthly $150 copay.

But fear of the drug’s outsized cost dogs her. “If I lost insurance, there would be absolutely no way I could pay,” she says. “Even if I had a lapse in insurance there is no way I could just cover a month of meds.”

The Albuquerque, N.M., resident isn’t sure she will have children. “Can I responsibly have kids when I have this very expensive drug I need to stay on?”


Gordon Theisz, MD

“If you’re forced to chose between paying the mortgage and meds, you’re going to pay the mortgage.”

When Gordon Theisz, a general practitioner based in Falls Church, Va., prescribes a medication, he’s not always sure his patients can afford it. Theisz has made a habit of asking drug company sales reps what the cash price paid by uninsured patients is for new medications on the market. For years the standard answer was about $100.

“In the last three to four years new meds coming out are being priced in the $300 to $400 range,” Theisz says. And it goes up from there. For patients without health insurance, psoriasis medications can run $1,200 to $1,500 a month, he adds.

Generic medication prices are also climbing. As the situation worsens, Theisz sees some patients forgoing meds altogether.

“If you’re forced to chose between paying the mortgage and meds, you’re going to pay the mortgage,” he says.

Solutions Database

High drug costs: What you can do

  1. AARP advocates for Medicare prescription drug price negotiation and reimportation of medicines. If you are an AARP member, you can send a message to Congress. Share your story.
  2. Patients for Affordable Drugs is an advocacy group that does not accept money from pharmaceutical companies. It is collecting stories about people facing high medication costs. Email them.
  3. PhRMA is the PR and lobbying group for pharmaceutical companies. It is running a campaign it says pushes to lower drug prices. Call them at 202-835-3400.
  4. The Medicare Prescription Drug Price Negotiation Act of 2017 would give the government the ability to bargain with drug manufacturers for Part D medicines. Read the bill. Call your member of Congress.
  5. The Creating and Restoring Equal Access to Equivalent Samples (CREATES) Act would require name brand drug companies to play nice with generic manufacturers. Read the bill. Call your Senator.
  6. The Creating Transparency to Have Drug Rebates Unlocked (C-THRU) Act would require pharmacy benefit manager companies to be transparent about how they handle rebates and where that money goes. Find out more. Call your Senator.
  7. Sen. Bernie Sanders wants Medicare for all. You can find out more and volunteer to help his effort on his website if you agree. Volunteer.
  8. Reputable online pharmacies in Canada supply medicines at a steep discount to what Americans normally pay. While technically not legal, Uncle Sam is not prosecuting individuals who do so. Check Canadian prices.

Tarbell is nonpartisan. We do not endorse you taking these actions. But sharing them with you is part of our commitment to helping you find solutions. Email questions to questions@tarbell.org. And learn more about these solutions here.